ฝัง
- เผยแพร่เมื่อ 27 ก.ย. 2024
- The HiHo kids met 15-year-old Philip, a geocacher from Alabama, Life Scout, and gamer who is living with Neurofibromatosis Type 1 (NF1), a rare genetic condition that can cause tumors to grow along the nerves within the body. Philip and the HiHo kids discuss NF1, its impact on his day-to-day life and how he raises awareness within the community. To learn more about NF1, including common signs and steps you can take if you or your loved one is experiencing NF1 symptoms please go to NF1andPNinfo.com.
Sponsor this series: bit.ly/2zNbqjw
Come play with us!
Sign up at bitly.com/hihofans to get updates on HiHo, special offers, and exclusive behind-the-scenes content with your favorite kids.
SUBSCRIBE to HiHo Kids: bit.ly/HiHoTH-cam
Don't forget to subscribe and follow us!
Facebook- / hihokids
TH-cam- / hihokids
Get HiHo swag here: bit.ly/BuyCut
About HiHo Kids:
Every kid - including the one inside each of us - needs imagination and curiosity about the world. Hiho promotes empathy through play.
Send HiHo Kids things to unbox:
PO Box 19604, Seattle WA 98109
Stay updated by signing up to our email list @ bit.ly/ytJoinTheFamily
For licensing inquiries: cut.com/licensing
Want to work with us? cut.com/hiring
Want to be in a video? cut.com/casting
Want to sponsor a video? cut.com/sponsor...
Love HiHo? Fill out this form for exclusive updates: cut.com/fanform
Kids Meet a Teen with a Rare Genetic Condition (NF1) | Hiho
• Kids Meet a Teen with ...
#nf1 #neurofibromatosis #HiHoKids
HiHo Kids
/ hihokids
I was also born with NF1 it's a rare disease and can be very scary at times. As a 29-year-old woman now I can say I have still lived a normal happy life. Proud of this young man for staying strong and positive!
Best wishes to you!
@@TarunoNafs
Thank you!
NF1 here aswell, 🙏🙏🙏🙏
I hope you are holding up well! Stay safe and bless you!
i am a 13 year olds girl and have NF1
these children are so unbelievably grown up
they’re going to be such genuinely good, educated people
I personally know Philip and he is very kind and actually pretty funny too! So thankful that he has gotten better and is still doing well! However it is heartbreaking that not all kids are as lucky as Philip is. So, if you have the opportunity I urge you to donate to help other children with NF1.
Wow me too!
@Creepy commit shut mouth
i have nf1 too and i haven’t met any teen with nf1.
@creepy, If you don't have any nice thing to say, don't comment. None of the people wasn't even talking to you.
@Creepy listen dude, why don't you take ur own advice and make everyone's life happier by shutting tf up okay and this is about people who are also fighting for their mkay?
These kids are all so empathetic. Honestly, gives me hope for the future!
Um im scared 😦
th
@
Blv@ what
yes !
It seems his voice was quivering the whole time like he was about to cry.... May God bless you with good health in the future 🙏
Yes GOD BLESS U AND TO BE HEALTH
when she asked, can you die from it, the boys face felt so sad. Oh i fell so sorry for himmm
Hiho, I'd like to recommend a thing. "Kids meet someone with Borderline Personality Disorder". I checked and there isn't a lot of those mental illness videos. As a newly graduated preschool teacher with BPD it's SO hard when you're ashamed of even telling adults about it. Normalizing it for kids would give future BPDs a better chance at socializing.
I feel you , I have also gone through it .
@@Sunflower_that_loves_you And I really hope it is not "Made for Kids"
Arielle is so grown up, I remember when was she 8 years old and broke down crying when her father was talking how the police officers tased him.
What do you mean?
@@gorog42 Look up the video: “Black Parents explain police to their children”.
@@a.j.marcantonio153 I am glad to see comments on videos like these, because bots will just mark this video as "Made for Kids"
Yes it made everyone so sad 😭 but I hope she feels better
That’s a different channel...
I was crying for him when she asked if he could die and how hard it was for him to speak and not be sad😕😥
Same 🥺
same...
True me to
Same
Same...
AWWW- “do you get a treat or a toy after the doctor?” GOD BLESS HER SHES ADORABLE 🤧💖
That moment between him and Austin was really sweet
just imagine these kids growing up and working at hiho and interviewing kids in the future.
I can see that in the future for sure.
That is definitely likely to happen!
Possible
Yep
I agree they have the confidence And very smart.
best quotes of this video
"are you okay?" 0:48
"math, science, thunder, clouds.... stuff like that" 1:02
"uh, I- I don't know I think they threw it away" 2:32
I have NF1, and I am so glad that you guys finally did an episode with NF. Thank you HiHo Kids!
Good luck to you and stay safe!
From a random guy on internet, are u doing alright ? Good luck on everything u do btw 👏🎉🎊
Doing fine at the moment. Thank you!
@@Wolfmyth100 is no one going to talk about how the comments are thankfully turned on and not marked as "Made for kids"
Same I never saw anyone like me with nf it feels great knowing someone is like me
I was born with NF1. I am the only one of 9 siblings that has it. I have had a lot of surgeries. All my tumors are in side me . I have to use oxygen at night because I have damage to my left lung . It is paralyzed, they removed a orange 🍊 sized tumor from my heart and left lung .
*hugs*
@@banshee1133 Thank you.
Best wishes to you ❤
@@TarunoNafs Thank you for your kind words.
I can't stop myself from crying after reading this 😞 Such a severe disease, I cannot imagine how hard it could be to you and other people who got it. I wish you lots of lucks, health and happiness 🍀
I've missed Austin! Kuya here..
Go to the plaaaytime Channel to see more of Austin!
He's so big now😭😭😭😭
Austin has grown so much!
Philipinas?
Subscribe to his mom’s channel
I also have Nf1 but have been very lucky to not have had a tumor yet, it’s scary to know at some point a tumor could grow and that if it’s in your brain that you could die
my tumors are very small on my arm
Phoebe- she talks so well and is so mature
RIGHT?
I have NF1 and I have lumps in my brain and have many birth marks which I was so so insecure about I am 18 now and learned to love them and call them unique. But the lumps in my brain are yearly scans and always stayed the same size thank god and got told they will cause me no harm thank god
Kids should never get serius dangerous disease... Kids should be happy.. hope Phillip are okay . And for hiho kids. I love how emphatic they are..
To everyone expressing that they also have the same or similar condition as him: stay strong, i'm very proud of how far you have come, things will get better I promise
Thank you
Thank you, it's hard to not feel different because of this disorder but seeing videos like this helps me to remember that I'm never alone
Thank you - I have only been mildly impacted by NF, but at times still worry about the future or how people might treat me if I tell them about NF. Seeing your post shows me that there are people in this world who do not look down on others with medical conditions and have empathy rather than judgment
:
My father had 3 tumours on his lower spine and most of the bones are missing. He can walk and do a few normal things but he still feels pain specially when he sitting on a certain chair
bless your father.
@@ketama180 i agree
i'm so sorry for your father but he sounds like such a strong person. God bless him :))
@@paulaarduo4619 Thank you and God bless you
@@ketama180 Thank you so much and God bless you
Phoebe is literally the cuttest, i love to watch her grow here, also all of these kids are sooooo respecful!
Why my tears fall when Austin said he lost his 2 ggrandparents 🥲😢
During covid. His mother made a video saying they couldn't even say goodbye. Earlier she made a post that her kids were sick so this timeline makes it seem like the family could have had COVID.
@@kittylo7922 aw 😞 i think they were april’s grandparents actually. so sad 💔
@@kittylo7922 yjml
He explained everything so clearly! He would be a great teacher in the future
For a rare condition like this, there are only few people will be interested to study them. Having an interest is just not enough, you need support for that study, like facility, finances, etc. Unfortunately no business entities will be interested to finance for this because this only means expenses and won’t generate income. Unless they’re the one having the said rare condition or one of the their family members.
awww hope it gets better tho
@Amanda Taylor yea sure you know phillip, goodluck with that buddy.
No it’s true, there is a FDA approved treatment, I’ve been on it 6 years and it did shrink my tumor 50%
@@philipmoss1690 ok cool
@Amanda Taylor because everyone says they know people in videos
I can really empathise with this guy. I also have NF 1. It was my mum who passed it on to me. I have had several non malignant tumours, one also on my neck. I too have regular MRI scans.
Same. It was also my mom. My tumors are in my head and spine..
Same I have it I probably got it from my dad
Hats off to this little boy , he's really small and so strong , let God play fair with him ❤
Philip you speak so eloquently and are very informed about your NF1 . I am 48 and have NF1. I wish I knew what you know at 15.
Same I’m 13 and nf1
I got NF too it messed up my arm i have like 13 surgery's on it im only 13 and i am like the only person in the world where it messed up my arm i think
Edit: forgot to mention that i also broke the same arm 7 times
I hope you'll do great!
Bless you
Omg,I hope ur okay kid,God bless u, may u live a healthy life 🙏 💝
Well you aren’t alone, many other people have the same problems
oh,i feel bad for you.hope you get better soon.i will try to pray for you and everyone with a disease.god bless you
I'm 13 too, sorry that happened to you
Omg my sibblings and i all have nf1 and i have never heread anyone talk about it i cant belive it i feel so important that it us being talked about most doctors dont even know about it they are like what is that and my mom has to explain their are more parts to nf1 then tumors like seizures. Learning disability weeken immune system. Scoliosis and prone to pretty much all the bad things and others i also have to go to other city for my doctors when i was little i was so self consious about the cafei spots becuse someone made a comment about it being like cow spots im so glad hiho is bringing awarness
I love this! I also have nf1 and i had similar experiences
@@danaschmich2644 wow thats so cool isnt it crazy when doctors are like what is that
Hi have NF1 too, I have tumors in my eyes so can't see much. It is amazing seeing him staying strong and positive
Hi, i have NF1 too. My tumors are on my arm very small and one small tumor on my neck. that some how went away. Also I have some of Café-au-lait spots on my eyes too.
Oh wow! Thank you so much for doing this. I have NF1. I live in England. It's not talked about enough.
My grandma had a brain tumor. One day her head was hurting so bad that they had to call an ambulance. She had to get surgery and they took the tumor out through her nose so she had to wear a bandage over it. She was in the hospital for over 2 months. After that she went blind. 😔
I am so sorry.
These children are so sweet and precious.
This showed up as an ad, I have NF1 as well. It's nice to be reminded that I'm not alone
Gotta love phoebe 😁
Ikr
Gotta love how you can comment and express yourself and not seeing a video that has comments turned off and "Made for kids"
Wondering why some people disliked this video (not asking in sarcasm but with genuine curiosity). There are no opinions shared, nothing wrong happened, no false facts, etc. but just a kid sharing his experience.
I’m so happy to see NF1 being talked about because nobody ever talks about it
0:21 the only moment when you realize that your mom is not watching you for the first time
thanks Hiho kids I also have neurofibromatosis type 1 thanks for sharing this means a lot do to NF1 I lost my leg about 10 years ago thank you kids
I have NF1 and have had many surgeries including bone, bone graphs, and kidney surgery. I also have a disease called Chiari and have had 2 brain surgeries from that. Throughout it all you keep moving forward and hope for the best!
When Austin mentioned his great grandparents... 👁💧👄💧👁
Woah!! I didn’t know you guys did this! I also have NF1
Teen: I think they through the tumor away.
Me: *HOLY COW YOU CAN THROUGH A TUMOR INTO A BIN O_o*
Well they sometimes do tests on these tumours.
Usually they will run some tests on it then throw it away
I'm pretty sure they use special red bins for disposing of biological materials. They wouldn't just throw it in a regular trash can.
@@PandaLilyZK In fact it's required by law to do this.
That kid knows a lot about the super rare condition he has . Wish him the best .
In the past couple of years I've seen alot of people becoming more aware of neurofibromatosis and as someone with NF 1 it's awesome to see.
I’ve had a neurologist (epilepsy) tell me to my face “you don’t have NF1 that’s too rare” only to go to a new neurologist for a genetics test and the results showed up positive for NF1 and a second genetic mutation (that they don’t have enough research for, fingers crossed it’s not anything serious)
@@Weirdastronount 🤞heres hopeing that it's nothing serious
The ‘you’re really nice’ exchange the two boys had at the very end of the video was so, so sweet. I would be such a proud mama if I was the parent of any of these kids ❤️
I have this condition and im 27, doing really well
But this kid is So brave for doing this to teach kids.
I miss Austin so much ❤️
He dyed???
@@vlogs_skittle nope 😭 but he rarely come in this Hiho content
Wow! Philip you are AMAZING! You are a true HERO to those kids. Your honesty and consideration of others is a gem. Thanks for making a difference in the life of US all.
its good to see Austin
Go to the plaaaytime Channel to see more of Austin!
Thank you for making this!! One of my best friends from childhood has NF1, and I recall him going through so much. Not many people know about it.
I have neurofibromatosis and I indentified a lot with him.
Sorry if I wrote something wrong, I'm not a native English speaker.
Loved this episode as myself have NF1 Thanks for showing
I felt bad when she asked if he could die😔
Thank you for this!! I have this genetic disorder as well! I have tumors in my head and spine. Non cancerous ones. But thank you!
Same with me I have on in my eye and all I’ve my spine
children are amazing...i get lumps in my throat and tears every time I watch these videos. So much goodness and compassion. There's hoipe.
I have a rare bone disease called MHE (Multiple Hereditary Exostoses )
Where multiple tumours grow off my bones like branches. Sadly only met one person in life with it.
But it's very interesting hearing about other conditions similar to it :-)
Hope you're doing okay , take care
@@Zaiion Aw thankyou
You aswell 😊💕
I have morphe we’re the skin on my body dies an it happens with my feet I have never met anyone with it
That kid is so courageous.... I start weeping like infant after getting cold or fever... Damn he is so confident ❤️
Is it just me or did anyone else laugh when he said “I’m from Alabama “
Why did you laugh
Pretty sure it was just you
Who is this child he's so sweet to answer hard questions like some of those what a legend
Stay safe! 😷
Please. Seeing them, talking, how they behave... My heart melted. 🥺
This is really cool. I have NF1 and I always love seeing videos where it is talked about.
I know right! I love seeing how I’m not the only one!!
Me 2
I have NF also
the kids are amazing , I wish I could be there and talk to kids . they are so cute
These children are so well behaved
Austin and Phoebe, are so genuine 🙂
S/O to the NF1 gang, you not alone
I honestly have a lot of respect for these kids for actually listening because I know for a fact when I was that age I would NOT BE INTERESTED OR ACT INTERESTED. RESPECT
For real, my attention span was to a minimum back then
Awww he is so cute I can’t 🥺
Philip is such a warrior and it was interesting hearing about NF1 and seeing how empathetic the kids were was very heartwarming. Poor Austin my heart just broke for him 💔
Feebee (if that’s how u spell it) has such a cute voice 🥺
Phoebe***
Good blessing he’s still alive he’s so nice and calming
Who’s still alive?
@@gunsparce people
i have nf1 too, this is so interesting to watch
Those kids are so sweet and nice I'm in love
Philip, you can totally be hooked up to a feeding tube pump and be able to do most things. I'm hooked up for 18hrs/day and carry my pump around in a little backpack. Same with my port-a-cath (chest IV). The only thing you can't really do while hooked up is swim and play contact sports, but you can always unhook to do that kinda stuff. Just gotta make sure to tape down the tubing to your skin in a couple places to keep from getting it caught and pulling it out. There's some amazing tubie pages on Facebook and the transition definitely becomes easier to deal with if you own it, and make the best of it. I was so happy to find other people with tubies who put vodka shots through theirs too. Keep swimming friend!
Topic: serious
Philip: could have almost died due to NF1
Kids: asking meaningful, almost emotional questions
Music: Happy and relaxing
Q)What do doctors do with the tumors when they remove it?
A) When the doctors remove a tumor, they study it to help finding a cure :)
Very true. Doctors are studying my brain. where I had a Café-au-lait
These kids have some pretty smart questions
I have nf1
Same here
@@OddSwiftGoose is school hard because of the nf1
Me to i get not girls :( but i still have friends :)
as 22 year old. it was hard cause i have/had epilepsy. which cause me to struggled with reading,writing, and math. i was special ed classes since 1st grade till 12th grade. so my whole life until i grad high school. but I had brain surge to end my seziurs which asue d me to think more straight and I'm off almost all my meds too @@rachel0923
I love that you’re doing this!!!! Next you should interview someone with Ehlers Danlos Syndrome I have it and think it would be interesting to have people with different types.
I feel so bad for this kid he seems so nice and caring
If I could choose which diseases go to which people I would not choose nf1 to go to him
austin is an ANGEL
That teen is teaching more than school will ever teach
Poor kid
U can tell he didn't wanna answer most of the questions 😭
I have NF1 too!! It's so rare and most people don't know what it is when I tell them about it. It's nice to see there are people out there who know how I feel 😊
Me too. I don’t tell my friends because I sometimes forget I have NF1
I also have NF1 and I only know 2 people who also have it irl (one of them I met through the hospital who wanted us to met)
Wow.. Such a grown-up wholesome conversation..
Early!!!
Love your videos!
Someone with nf1 here!! I only have one tumor so far! The experience is scary because now (as a teen) I have functioning nausea. A lot of the tumors aren't cancerous. I named mine Candace. :D
Despite having NF1, he still showed interest to the next generation. Man got the spirit and a different ability.
First
You are!
bruh u are actually 😭
When hospitals excise tissues, especially tumors, a sample is taken and placed in a formalin solution which preserves them. They are then studied in a laboratory, usually within the hospital. The specimen is cut up in smaller pieces for further study, and some pieces are put in paraffin wax and sliced into little sections so they can be viewed under a microscope. Different dyes may be applied too so some types of cells are easier to identify from others. After examining, other tests might be done on different slides, such as immunohistochemistry, a test that is widely used for diagnosing cancers.
If you never get a call to hear back about your sample, that's a good thing!Any other extra tissues that are removed during surgeries or other procedures are put in biohazardous waste bags or bins, and these are collected and transported to a site where they are incinerated at special facilities for that purpose.
Source: I work in a hospital.
I almost cried that made me so emotional. God whatever bless you are putting on that guy double it. It's honestly hard for some people not to cry when sharing stories that are very personal to them so
I give that guy see if for not frying I mean he is so nice like I am along crying
Almost*
These kids are amazing. Bot Phillip and the HoHo kids. So sweet, polite snd caring. I wish I had been like that in that age, but trust me, I wasn´t. :(
I have Nf (don't know what type) but pretty much all he said is true. It makes me feel amazing to see others with it. (Meaning I never met someone with it) Nf isn't hard for me I haven't even had a Mri done in about 2 years.
Austin is so chill
he seems out of it on the death question
It’s something that could happen with NF1, because we have an increased growth of tumors we have an increase chance of having cancer. So far I only have 3 or 5 tumors that are non-visible. I feel 2 tiny bumps on my face that I hope will not grow, but the future is out of my hands which sucks. It’s something I think about everyday
@@Weirdastronount Ok lauren
I was born with NF1 and I’m 13 now and my mom took me and my brother to the doctor and we both have and and have to do check ups daily